LIVING WITH PAIN: PHYSICIAN ABANDONMENT AND SUICIDE IN FLORIDA

This is the heart breaking story of a woman who lived for 12 years with excruciating pain and little help from physicians. This tragedy was told to me in an interview with Joe, the woman’s husband. Welcome to the War on Drugs!

Thank you for your blog. I’m thinking of starting one myself for the same reason. There is a true witch hunt on doctors who prescribe for pain patients, and chronic pain patients are being stigmatized and victimized at such level of discrimination I believe we have to organize and make OUR VOICES heard for a change. I am a chronic pain patient who got “the letter” from two doctors separate doctors over the last seven years. Actually, the second doctor, who I last saw on May 29th 2012 (while he reiterated his commitment to pain patients, reciting the two recent articles from The New England Journal of Medicine he continually refers to stating how we are UNDER TREATING pain patients in this country) pulled a real stunner. During this appointment he also said that he’s thinking of organizing a protest or march. I reminded him I that I write, and I’m gearing up to the write some op-ed pieces and articles about the impossible plight of pain patients and doctors who have the bravery to treat us. He increased my dosage because I was in the throes of a three month pain flair that I could not seem to get any relief from, even adding yoga and finally nighttime tequila shots to my regimen.

Three days after that appointment, I received “the letter”. It had obviously already been drafted and was probably being stamped at the front desk as we spoke in the examining room. It went to my mother’s house; I’m not really sure why or how they had that address on file. My sister, who has advanced lupus and has also suffered from chronic pain for decades, told me I had a “the letter” from Dr. James Carlson. My stomach sunk, as I knew viscerally and with complete and utter certainty what was in that envelope and it was not a health insurance statement. We had both been here before, approximately four years ago, when Dr. Jim Best sent us the same letter. I told her to open it and just read it: “As of July 1st I will no longer be treating pain patients….I will fill prescriptions up to and including July 1st”. I had an appointment on June 22nd.

I knew, with the current climate, that although I was broke it didn’t matter because at this point no amount of money would get me past a doctor’s receptionist and into a doctor’s office. Even the misnomer, “Pain Management” tells you the same BS – “we do not prescribe opiate medications, we only do injections.” I was assigned a new doctor by my insurance company. When I called them to make a routine appointment, the first question they asked me was “are you on any opiate medications?” Yes. I’m sorry; the doctor will not see you. Click. Then, to up the tension, I got a call the very day before my last scheduled appointment – “We have to cancel your appointment tomorrow. Dr. Carlson has disappeared, he has left the state, he’s gone and there is nothing else we can tell you “. The floor dropped out from under me – I had to keep them on the phone until I got this information through my head. I have known this doctor for 15 years; have known of him as a local doc for twenty. He was my maternal grandmother’s doctor. He was my friend, my confidant, my reliable warrior, my protection against a raging, unjust war. This doctor has me on quite high dosages of pain and anti-anxiety medications (I also suffer debilitating anxiety attacks and have PTSD). I can only foresee signing myself into the local hospital in intense agony, raging panic, writhing with pain and flailing with seizure. I cried for days, I could not get out of bed for a week and a half. Then the anger set in…but there’s no way to get back at him, this doctor DID truly disappear.

I got a break, one in the pain briefly and the second that my sisters very reputable but expensive rheumatologist will see me as I know him and his very lively, empathetic wife who is also his office manager. My sister asked to speak with her privately and told her of my unfortunate situation. I do also have a lingering lupus diagnosis that needs to be clarified and I have one day of medication left. He carefully looks me and my records over. They draw blood and he skirts the issue of medications – even though he has known me for a couple years (I drive my sister to the appointments as they are on the border of the city – at least a full hour’s drive without traffic). I know this drill, and I don’t blame him. I tell him the truth: I didn’t want to know if the lupus diagnosis was truly positive because I do not want to take any more pills. He says “well, you ARE taking pills”. Yes, but I do need to be able to get out of bed in the morning as I am stiff and pain is searing before I take my medication – after resting on my back all night. I’m not going to push this or act like a “drug seeker” because although I NEED this medication, it isn’t like I WANT it. I wish I was “just” an addict – rehab sounds like a wonderful, cuddly vacation for me at this point in time. I do tell him I would be willing to come down if this makes him realize I am not an addict seeking a high – but, let’s be real. When you have been on pain meds for years, you do not get “high”. I actually HATE it when I have to go up on my medication because it makes me feel rubbery and I find it difficult to do important things that take more concentration – like READ and write.

Now, I feel my life and whether I will be spending NEXT month in a hospital is contingent on whether or not I truly do have lupus or not. Although I have degenerative disc disease, spinal stenosis, bulging discs and pinched nerves, which I have suffered from for 40 years – which the first 25 I treated with chiropractic visits until they told me 15 years ago that there was nothing they could do to help me or relieve my pain anymore. Surgeons won’t operate – that is: “until you are in a wheel chair and shitting and pissing yourself”. So much to look forward to. Now I have to pray lupus comes back positive again.

What angered me the most, when my trusted, devoted doctor packed up three of his computers and took off for another life was what I had planned to do this time if this happened again: killing myself would not be possible because he bolted on me when I had only a couple days medication left. Now, if this doctor trusts me and treats me, no matter how much pain and depression, which pain exacerbates, I experience – I WILL NOT kill myself for out of loyalty to my current doctor. Because, no matter what else would drive you to this, and chronic pain patients only know too well how this whole thing spreads throughout your entire life, I know they will blame it on “prescription drugs” and investigate a perfectly valid, professional and compassionate MD. But, from both my sister’s and my own experience – at best this will happen every four years – with the current climate and unconstitutional discriminatory laws that are being passed nationally that stigmatize and punish pain patients. I guess we must do what the good doctor, Paul Sloan, who runs LEGITIMATE Pain Management Clinic’s in Sarasota and Ft Myers – and had the kahunas to challenge the restrictive law being passed in Florida (I lived there for 3 years and know he was extremely careful about who he treated and how) – recommends you do if you are a pain patient and have prescriptions – squirrel them. Because you probably will not know if and when you will ever get to see a compassionate doctor to treat you again. Not very optimistic. From where I stand I only see more and more pain patients seeking, out of desperation, illegal narcotics to treat their pain and we will definitely see more and more pain patients resort to taking their lives as their quality of life is so poor. And it will be virtually impossible to find doctors – for fear of losing their license or having the DEA rummage through their office like a plane full of heroin at JFK – who will treat us. I know what my sister and I have discussed how we will deal with our ultimate demise, if something else does not get us first. It’s all so insane. I still in the phase that this feels like this is a bad, bad dream – like the “tea party” taking over Congress. All this talk about “getting big government out of our lives” from the same people who are invading every aspect of how and what we do with our bodies. The “war on drugs” is a lost cause. Because they will not face this they have expanded it. It’s truly terrifying what is going on in this country. All the talk about “freedom” is laughable. It is absolute and complete propaganda and all those who drink the koolaid are seemingly either stupid beyond belief or suffering from the Stockholm Syndrome. From women’s control over their own reproductive health to death with dignity and now the war on pain patients. As my doctors receptionist stated to me “why don’t you just go to rehab” when I declared that I would be out of medication in a matter of days – the same office where that very doctor once turned and looked me straight in the face and said “Deborah, it would be outright malpractice for me not to treat you”. I don’t know where the phone receptionist got her degree, but if it hadn’t been so insanely amusing to me at the time, I would have taken the five minute drive over there to spit in her face.

I don’t like where this is going – and it’s getting worse. Things tend to go to extremes in this country, which is still yet a zygote. Black and white, good guys and bad guys – everything in extremes, we are living the reality of a country in the throes of borderline personality disorder. Life exists in the grey areas. We must speak up, we must get organized, we must tell our stories, we must get people to see the grey area and find a middle ground where palliative care and pain management are REAL medicine and not just worry only about the seventeen year olds who get their hands on cancer and arthritis ridden grandma’s Oxycontin and have to pay the unfortunate price. Hey – seventeen year olds drive cars recklessly, drunk, inexperienced and even texting – endangering EVERYONE”S lives and cause more accidents statistically than their older counterparts. So, do we then just outlaw driving? This is madness, and we must muster the energy to organize and bring attention to our plight or else we know the outcome; innocent, valued and beloved people will die for no reason other than an irrational reflex reaction by interest groups of people that have no idea of how life is for those whose health is not prime. This is just more Social Darwinism – is this what we have truly become? Only the survival of the fittest, if you’re unhealthy stop taking up a handicapped space? The implications of this are far reaching and it comes down to one thing: we are discriminated against and are being marginalized. It’s time we “outed” ourselves and stood unified – shine some light on their ignorance – their days of pain will come, but ours are here now. Let us at least let’s try to tell OUR STORIES before resorting to taking the last prescription on the horizon with some vodka and a plastic bag chaser….

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Yes, I post notice of my column each week on my Facebook and other Facebook pages, LinkedIn and DIGG. My columns can be dug up at the American News Report by going to the upper right corner of the face page and either typing in my name, Mark Maginn, or by typing in “Living with Pain” the by-line for my work. Please comment whenever you’re moved to.

Background info: I’m 23 years old female. I irjnued my back about 7 or 8 years ago, I got whiplash from a bucking horse. They think I tore muscles and ligaments in my lower back, nothing was broken for the X-rays. I did physical therapy (PT) for it for about 6 months. About 3 weeks ago I found out that my left leg is about 3 cm longer than my right and could be causing some of my back pain. Oh and I have consent lower back pain. About 1 year ago in March I was diagnosed with lateral tracking of the patella on my right knee. I did 6 months of PT for it and I’m back in PT for it and have been doing it for a month and half. I got an MRI and it was clean, nothing torn or broken. The surgeon says I definitely have knee pain but the cause of it is unknown and surgery right now is not a option. I can’t run, go up or down stairs with out pain, sitting or standing for a long time hurts, driving hurts sometimes, I cant put all or some of my weight on it. I get a burning pain in the inside of knee, it makes a popping feeling, and on the top outer ledge of it. I’m going to go see an orthopedic spine surgeon this week, but this would be doctor number 4 that I have seen for my knee. I really just want to run again and have someone tell me that they know why I’m in so much pain. I can deal with the back pain b/c that never stopped me from running, riding, or got in the way of my life but my knee has. So if anyone can give me clues or help me out with this I would greatly appreciate it. If anyone knows of a Dr. House for knees please let me know!

I have started hanvig major back pain, mainly in my lower back, but have never been to a doctor for it. Unfortunately in high school I chose to march a tuba in band for three years straight about 20-25 hrs. a week. I am only 4’10 and 105 lbs. Also, I am a waitress and I have to carry 50-60 lb. trays all day full of food. I have tried taking advil, tylenol w/codeine, ibuprofen- everything, even stonger stuff. Nothing has worked, except for my father’s vicodin which he lets me take on occasion. I want to go to the doctor and have him help me with this problem, but I don’t want to come off as a drug-addicted young person begging for pills, but so far vicodin is the only thing that has seemed to do the trick. And I don’t like going to the chiropractor, I just feel uncomfortable with someone touching my back and it cures the pain for a day then it comes back. So I don’t know how to tell the doc that I can’t get physical help with it.I dont really believe in taking pills, but lately vicodin has been wonderful to me. What do doctors usually prescribe or recommend for back pain? What do I do?oh I’m 20 by the way

Thank you for posting articles about pain, you are truly a great writer. I’ve battled chronic pain with no answers or doctor compassion for years. This blog is helping me realize I’m not alone. It is heartbreaking everyday to watch the world around me go by while I’m in painful agony. The worst feeling in the world is being asked to play by my 6 year old and responding with, “I can’t right now buddy”. My husband is a huge help and very supportive, but I fear he will get sick of all this. I just don’t know how people in legitimate pain can be overlooked, mistreated, and dismissed time and time again from doctor’s offices. I really am inspired by your posts to keep going and use my voice to raise awareness to those who don’t understand chronic pain.

I have a disease called Transverse Myelitis. It is very painful. I’ve been under my drs care for three years. last month they dumped a bill on me for $490 I had never previously received a bill. I have an appointment tomorrow morning with my doctor. On Friday I received a phone call saying that if I did not bring $200 to my appointment my doctor would refused to see me. I’m on narcotics anti Spazmatics and medication for nerve pain. All of which stopping abruptly could be detrimental to my life not just my health. I’m disabled so living on disability I don’t have the money to pay 200 dollars tomorrow. Any suggestion’s?

As to you question, it seems your options are truly limited. I’d suggest a two-prong approach, go to see your doc with $200 and look, and I know this is far from easy, a new doc. Further, I’d contact my congressman(woman) and explain what has happened to you and ask for legislative action to prevent providers from doing this reprehensible kind of thing. It seems axiomatic that only pain patients face this kind of harassment. I’m sorry this has happened to you. Could you let me know how you handled this?

Me and my spouse called to have our medicine refilled that we have been on for 5 years and me for 13 years and the doctor told the medical assistant they were no longer refilling our medications. We have not breached our contract and 2 of the medications we are on cause severe withdrawal symptoms and also can lead to death from seizures. We both had to go the ER and I was admitted for 5 days. I need to know if you all have someone you would refer us to because the doctor has previous cases against him and they were very rude to us and put us in a very bad predicament. What I have read is that they have to provide at least 30 days for you to seek another doctor to receive proper care. We were advised just to go to the ER. I have printed the forms to send in to the Florida Board of Medicine but before I do so I wanted to possibly seek an attorney for representation because I lost a week of work from being inpatient and have to wait another 2 weeks to get in with another doctor. Thank you in advance and hope you have a great Labor Day. We were both abandoned by Dr. Rahn Shaw of Apopka Florida. Our regular physician who works in his practice was put on maternity leave but told me and my spouse that our refills would go through one of the other doctors in the practice. It so happens Dr Shaw owns the practice. I am lost on where to go but I can assure you with being on 3 different narcotic drugs for years that he has filled before and my doctor on maternity leave is very dangerous and unethical to stop abruptly. We have proven records to justify why we are prescribed the medication we are on. It is so sad to see people going through this and now we are part of that group. I just dont know what to do. We do not have insurance so we pay cash for the doctor and also the prescriptions. I use all kinds of discount cards for those. I am in the Orlando area..I will being seeing a new doctor in the next 2 weeks but I am just like baffled on what we are going to do until then. I have debilitating anxiety and panic disorder that sometimes its hard for me to walk out of my house. My husband has recently been diagnosed bipolar with manic episodes. We have never doctor hopped or shopped. If anyone has any suggestions it would be greatly appreciated and I will be contacting my congressman to let them know as I just read above. God Bless you all and I hope you have a pain free or tolerable day.

I am so sorry to hear of your predicament. Your troubles are the troubles of many thousands of people with pain. The things you have done, contacting your congressman and others is exactly the thing to do.

Unfortunately, as a columnist, I am not in any position to give referrals to you, especially as I’m not a resident in your area.

One thing you can try, & with what success I cannot know, is to contact the American Medical Association in your state and ask for a pain doctor in your area. This may or may not be helpful.

You are also in the predicament of having dual physical and psychiatric diagnoses. This is important to share with the AMA as you try to locate pain doctor.